My Mother has GBM IV and is unwell after surgery and radiati

nairpan · Regular Joined: 06 Jan 2010 Posts: 10 Location: India

My mother aged 69 in India, developed a seizure on 31 August 2009. She had difficulty in remembering names and places for about one week prior to the seizure. She was diagnosed as having a lesion in left frontal lobe of 3 x 2.6 x 3.3 Cms and had surgery on 25 September to remove it. By the time of surgery she had weakness in right side and could not control her bladder. Besides she was speech impaired. On 5 October she was discharged from hospital and after 2 weeks she could walk and had regained bladder control. However her speech was impaired and she has terrible mood swings. Her biopsy examination confirmed that she was suffering from Glioblastoma Multiforme Grade IV. She was advised to undergo radiation. She developed seizure for the first time after surgery on 28 October. Conformal radiation started on 29 October and she has radiation for 33 days. Besides she had temozolomide for 33 days during radiation. She had seizure again on 25 November. Her radiation ended on 12 December 2009. Though she was speech impaired and had mood swings, she was in good shape compared to the situation earlier. She had to be assisted on her daily chores and she could walk on her own. Right after the surgery, she was having Eptoin 1-0-2, Decmax 4mg 1-0-1, and Pantodac 1-0-1. From 23 December, Decmax tapering has started.
She was bought by train on December 21 to my place about 350 Km away from the place of treatment.. She was very happy and seemed to be enjoying the company with me. My mother had another big seizure on 26 December 2009. Her right hand was completely paralyzed and had a great weakness in her right leg. Since she has not regained her strength in 2 days she was taken to a neurologist on 30 December. She was advised oxetal 1-0-1 along with Eptoin. She had a very mild seizure on 31 December but she has not has any since.
She was however getting worse and preferred to lay in bed majority of the time. She was averse to eating food. She sleeps a lot. She again started to loose her bowel control and looks weak and sad. She cannot move her right arm. Since she was getting weak she was again taken to the neurologist and an MRI was taken on 4 January 2010. The MRI result was shocking .The impression given by the radiologist is that “ There is a large complex mass involving left frontal lobe with extensive odema of fronto –pareital lobe and corpus callosum suggestive of residual/recurrent High Grade Glioma / Glioblastoma multiforme”. The neurologist has suggested that the resection done might not be complete. He indicated a possibility of second surgery, but says the specialist hospital might surely not perform a second surgery.
I am now worried about the state of my mother. She has a Masters in Civil Engineering and retired as Professor in Engineering. I have to take some decisions about her future course of treatment. She is about to start Chemotherapy possibly oral temozolomide cycle from 16 January.. Treatment is available only there and I feel she would not able to travel 350 kms and back and I am worried
I have a few doubts
1. Would a second surgery be effective
2. Even if a second surgery is not done, can chemotherapy be done and would it be effective
3. Why has it recurred soon after the first surgery and radiation
4. Was the radiation ineffective
5. Can the MRI after radiation be affected by something called radiation necrosis
6. Has the tapering of Decmax any effect on the present situation

This note might have some point left out and I could add it if pointed out. Looking forward for helpful tips

jammor · New User Joined: 06 Jan 2010 Posts: 5

Nairepan:
I am sorry to hear about your mother's condition. Unfortunately I have no answers to your question as this is my first post to the forum and I don't know anything much about this disease. I am rapidly learning.

I hope it is not inappropriate to post this message as a response to your mesage however I cannot figure out how to create a new thread on this website with my concerns.

I mainly hope to enter into internet dialog with other caregivers of family with GBM.

Mom is 78 and has a strong faith. She is not afraid to die, which helps her deal with the diagnosis. She has accepted it better than I. The doctors made the diagnosis from MRI only following a cerebral hemmorage. Mom declined a brain biopsy for fear of further post-op deficits. She already has lost much of her control over her right side. Doctors say left parietal GBM grade 3 or 4 likely. They give her 3 months to live without treatment. She has declined all treatment.

I brought her home today and am doing home hospice. She has no pain. On steroids that seem to have made her insulin dependent.

I would welcome any conversation with others in my position. She is alert most of the time, some confusion and hard to find words but understands the prognosis. I want to make her last months as comfortable as possible.

Once again Nairpan I pray for your mother and will keep her in my thoughts. I will be taking a leave from work to care for Mom and want to make sure I do everything I can to make her last days as comfortable as possible.
_________________
Mom's caretaker

nairpan · Regular Joined: 06 Jan 2010 Posts: 10 Location: India

Thank you jammor for your prayers.

Her condition has not improved since yesterday. Today she limps her right foot while walking with assistance. She can’t get up on her own and has to be helped. She murmurs a few words often on seeing me but the words are not intelligible and I can’t make out. The assistance I have to provide has increased and she cannot walk on a straight course.
I take her to toilet to pass urine once every two and a half hours but sometimes she passes on the way. I am also worried that she may develop bedsore. So I make sure she changes her position in bed once every two hours or so. Her face looks a bit reddish and swollen. She can’t keep her head straight and hence saliva drips down often. It is very difficult to brush her teeth also.
She was very brave and she was particular that she had her surgery and radiation. But now she can’t convey any meaningful idea.
I am the primary caregiver and I wish to purchase a wheel chair with a toilet pan. After going through the forum, I am not sure whether she would be able to use the wheel chair or be completely bed ridden.

patsy · New User Joined: 31 Jul 2007 Posts: 1

I'm sorry to here about you mothers condition & I have very few word of comfort another than after the death of my husband one of the few consalations I had was that he died with dignity just how he lived. He also had a Glioblastoma IV, & it is very difficult if not impossible to remove the whole thing once it has taken hold. My husband also declined further surgery & even though I found that hard to deal with at first after a while I understood, respected & agreed with his decision. His life was becoming impossible for him & he tired of fighting. As hard as it is to come to term with, enjoy what time you have with your mother, as I'm sure you do.
God Bless, Patsy.

jammor · New User Joined: 06 Jan 2010 Posts: 5

Thank you Nairpan and Patsy.
nairpan are you living in India? Do you have traditional at-home nursing/Pallative care as we do in America in addition to having the options of aggressive treatements as your mother has been doing?

Although I am only two days into my hospice experience I am very impressed with the support I receive from the staff. A nursing aide comes daily and provides a bath, diaper change (mom has a catheter so I can easily drain that). Mom is able to follow commands and hold some conversation. Nights are confusing to her and I sleep in the room and turn on the light, feed her, talk to her etc when she awakens and is confused.

Patsy does the confusion progress to the point where I will be unable to soothe her? I guess everyone is different but she does Soooooo much better -orientation wise- in the middle of the day with the sun out and when she is not too tired.

meds are Kepra, dexa-something steroid 4mg being tapered off, valium 5 mg BID, tylenol 3 every 4-6 hrs (prn), propranolol, risperdal, stool softeners....think thats it now. She was insulin dependent under high doses of the steroid. That is improving now and she is off insulin.

I am worried she will get constipated. She is refusing stool softener and has not had a BM in three days. I know you don't give medical advice here and I know the nurse will tell me to "push" the stool softener...anyway its hard when she thinks she knows best.

Guess I'm rambling. Patsy one frank question I have is that I feel guilty for hoping this takes her quickly. I know wikipedia (and the doctor not less!!!) project about 3 months to live with a tumor her size (either 3 cm or mm i cant remember which). We are still enjoying some time together but she worries about things that aren't real- guess she is getting delusional at times and she is just not real comfortable. Not in pain but hates the restiction of movement. I want to get her up in her Geri-Chair but she resists the movement. The tumor is in the left parietal motor cortex. Is there anyway to measure the steps of her demise...like I guess I don't know the stages she will go through as she gets worse and that scares me.

I have read some pamphlets about how the body shuts down but I just wonder how long she really has? How long will she be able to communicate? How long will she be conscious?

Thanks for listening and any lay advice anyone has is helpful.
_________________
Mom's caretaker

nairpan · Regular Joined: 06 Jan 2010 Posts: 10 Location: India

Thanks for the replies.
My mother’s health is deteriorating and doctor I contacted told that if I increase Dexamethasone to 12 mg daily, her condition might improve slightly for the time being. I did so and she was a little better. She began to repeat the words we talked and she could be made to walk a slightly easier. She still cannot control her bladder sometimes and there is no meaningful dialogue between us. I plan to maintain Dexamethasone at 8 mg daily as was given earlier after a few days.
As Patsy suggests, I am trying to spend more time with her and it’s the reason why I have taken my mother to my premise about 350 km from her usual place of stay. In the nights I use a diaper for her, but she finds it uncomfortable and gets up around 4 AM. She cries or shrieks until I remove it.
Jammor, Palliative centres are available, but I am not having access to such centres.Here I have one maid to look after her during daytime while I go to work. In the evening and nights my wife and me looks after her. Since it is getting more difficult, we plan to employ a full time maid.
In India the ayurvedic system of medicine is highly appreciated. I have read in dailies and magazines about its effectiveness. I know about a highly regarded ayurvedic hospital in south India named Kottakkal but I am afraid if I post the link of the hospital would be against the forum rules. My feeling is that ayurveda takes some time to produce results, however in the initial stages ayurveda can be effective

Today my mother had a reasonably large seizure for two minutes. She is now sleeping and I hope she would be as before by tomorrow morning.

jammor · New User Joined: 06 Jan 2010 Posts: 5

nairpan:
Thank you for the reply. I hope that your mother enjoys as much rest and lucidity as possible and you and the rest of her family can enjoy some of the time together.
Mom prefers diapers to actually having to get out of bed. She has a delusion that God has removed her need to have BM's and refuses laxatives unless the nurse is here who insists she take them. She hsa a foley catheter which is useful when dealing with urination and prevents the diaper from being changed more than once per 24 hours.

She is presently being weaned off of the steroid--decadron. she is down to 3 mg daily> she was at 8 mg for a couple of weeks. Her most confusing times are upon awakening and I have struggled to get decent rest at night as she wakes every two hours requesting various things, however frequently not ebing able to articulate her need.

I continue to be concerned about bedsores developing and am learning rapidly how to turn her every two hours and move her body as she is a big woman.

We are abel to enjoy several hours per day of relative lucidity and for that I am greatful.

She has no pain from her head. Her pain symptoms are pre-existing from arthitis and she takes tylenol #3 which further contipates her so I am always looking for foods/liquids she will take that will help with that.'

I wish you and your mother the best. it is nice to have a cyber-friend to talk to during this stressful time.

Jim
_________________
Mom's caretaker

nairpan · Regular Joined: 06 Jan 2010 Posts: 10 Location: India

I was not updating this thread since I was more engaged and couldn’t find time to type and post.
Two weeks back, I went to the town where the specialist hospitals are located. I consulted a few neurosurgeons and an oncologist. They all suggested that from the MRI, it is evident that the tumor is growing back. They advised palliative care besides the usual medicines.
She is getting weaker and has not had any seizures, but has turned more dull and disinterested, does not speak. She had finished her first cycle of temodar and I notice that her difficulty in swallowing foods has increased. Checked her blood after first chemo cycle and vitals are around normal. She is now struggling to eat food as well as medicines. She has a limping in her left leg and cannot walk, as her right side was weak earlier. After chemo, there is some rash in her skin. Some skin is peeling off from her lips.
Seeing her in such a state makes us worried.
She is now confined to the waterbed and she wears a diaper, which we change twice every day. Cleaning her mouth, and feeding is difficult, as she does not cooperate. She is made to sit in a chair twice every day for half an ahour.

Next month, the chemo cycle probably has to be continued.

I hope I get time to update next week.

brainman

nairpan, I am very sorry about your mother's condition. I know how you must feel. My mother died of a GBMIV in 1998 just two months after her diagnosis. My father and I were her primary care providers during that time.

You and your mother are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
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My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
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jammor · New User Joined: 06 Jan 2010 Posts: 5

Hi Nairpan:
As you know we have taken the pallitive care option since her diagnosis. She is bed fast with right side paralysis and she could get up into the chair but we do not do that because it causes her pain in her body. She has always resisted getting out of bed since the diagnosis so I am NOT recommending you don't do that as it is a good therapy to prevent bedsores.

Mom has had little pain except for gastro issues and contipation. We have taken measures to clear her bowels and now she is much more comfortable. She cannot talk with any meaning.

She prefers a liquid diet and basically is surviving on broth and water. I know the end is near.

Our Pallative care team is great and they come every day. It really helps support me as a caregiver and more importantly Mom as the patient.

I wish you the best

Jim
_________________
Mom's caretaker

nairpan · Regular Joined: 06 Jan 2010 Posts: 10 Location: India

Brainman, Thanks for your prayers.
Jammor, I am not sure whether my mother is suffering with pain while I move her to chair from bed and back. She does not speak except making some sounds. I think she is having constipation too, but I have mot given her laxatives as yet. She is having liquid foods only. I would wait for another two days before giving her some laxative.
As such it is difficult for her to swallow medicine. I grind the tablets to a powder form and give it to her.

Best wishes and prayers
nairpan

Imli · New User Joined: 27 Jan 2010 Posts: 8

Nairpan

We are in India as well and in a similiar situation. Its very hard to say the very least. Will pray for you as we pray for our mother. If you feel like talking , let me know and will send you my cell number to your email ID.

Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

Disclaimer : My answers to your questions are based on my observations and experience.

I have a few doubts
1. Would a second surgery be effective

The tumor continues to grow. You may not visibly see it in a CT scan until it is large enough. As I know, people give in for a second surgery but with little hope that the disease would not recur again.

2. Even if a second surgery is not done, can chemotherapy be done and would it be effective

GBM tumors are very aggressive. During final stages, medicines seem to have little or no effect. I am not sure if chemotheraphy will help at your stage.

3. Why has it recurred soon after the first surgery and radiation

It looks like an advanced case with the tumors growing aggressively. Not sure if they have started spreading.

4. Was the radiation ineffective

As I know, in the final stages of GBM, not much can be done. If you are lucky, the tumors may not grow again. But that is 1 in a 10000 !

5. Can the MRI after radiation be affected by something called radiation necrosis

Radiation necrosis can be a possible cause. But if your mother is showing signs of deterioration, then it could be progression of the disease. A doctor will be able to comment better.

6. Has the tapering of Decmax any effect on the present situation

I have no idea what this is.

This note might have some point left out and I could add it if pointed out. Looking forward for helpful tips[/quote]

nairpan · Regular Joined: 06 Jan 2010 Posts: 10 Location: India

I am updating the situation here.

My mother seems to be a bit better for the time being. She adjusts her gaze and look as if she is attentive to any activity taking place in the room. She still has liquid food only and tablets are given powdered and mixed with water. Sometimes she murmurs mildly for a few minutes but I can’t make out whether she is yelling out of pain. She has slightly high temperature sometimes. Most of the time, she is confined to bed and around three hours daily she spends time sitting. For the past few days, she has a sponge bath and she has a bath once every week. I have got information about a palliative center in my locality and they are said to educate the caregivers on better procedures for patient handling. They visit the patient once every week.
I am worried whether she can continue oral chemo second cycle, as she can’t swallow the capsule. Besides she turned weaker after the first chemo cycle.
Thanks for the answers posted by vasanthi. I believe my mother has the worst form of tumour and nothing more can be done specifically. Decmax is dexamethasone. It is indicated primarily to reduce the edema resulting out of tumor.

A little off the topic, I hope the admin would let post in this forum, about the caretakers dilemma. My father aged 77, was undergoing treatment for Mitral stenosis for the last 10 years is unfortunately again in poor health. So I have to dedicate some time for his health care and I am stressed. His valve is more constricted and has a clot formed there. His condition is not ok. I am their only son and to make matters weak, I am now plagued with CSR (Central serous retinopathy) in my left eye since two weeks. I have some difficulty in reading but anyhow have not let it affect my caretaker schedule in any way.

Nairpan

Vasanthi · Regular Joined: 20 Oct 2009 Posts: 12

If you are in Bangalore, India here is the number of a person who can help you with a home nurse. ( mobile : 9844495527 ). I am told they provide good service. Another place to get home nurse support would be karunashraya.

Old Airport - Varthur Main Road, Marathahalli, Kundalahalli Gate, Bengaluru, Karnataka 560037, India
080 42685666

www.karunashraya.org

Bangalore's BGS Global Hospital, Kengeri probably has contact numbers of a few people on mysore road who could support you. The ladies provided by these agents are generally from rural areas of Karnataka but are kind hearted, as far as my experience goes. They even go to the extent of cooking and home making apart from patient care.

If you are outside Bangalore but willing to support them on relocation, I presume they might agree.

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